Surveillance, Epidemiology, and End Results (SEER) Program

SEER Progress Report to the BSA

November 7, 2008

Brenda K. Edwards, Ph.D.Surveillance Research Program, NCI

Sally Glaser, Ph.D.Northern California Cancer Center

Dennis Deapen, Dr.P.H.University of Southern California

Rationale for SEER

• 1971 National Cancer Act: – SEER established in 1973

• Surveillance (Incidence, Survival, Mortality)– and more

• Improving quality of cancer care

SEER is a mainstay of the National Cancer Program - it provides baseline measures of

cancer rates essential to public health surveillance and focuses our research on

the most important problems.

SEER: Measuring Our Nation’s Progress Against Cancer

• Holds us all accountable for the public health impact of our science

• Foundational component of a national data system for cancer research and monitoring

• Unique resource that allows cancer to be a model for monitoring chronic disease(s)

• Provides essential data to inform the Nation’s cancer health policy and practice

Geographic Coverage

UT

NM

Hawaii

IA

Seattle/Puget Sound

Connecticut

Original SEER Registries

MetropolitanDetroit

Los Angeles

San Jose/Monterey

San Francisco/Oakland

Atlanta

SEER: AK Native Tumor Registry Added in 1999

SEER Registries Added in 2000

CA

LA

KY

New Jersey

SEER: AZ American Indians added in 1980

SEER Registries Added in 1992

Population Coverage by Race/Ethnicity (2005 est.)

0%

10%

20%

30%

40%

50%

60%

White Black AI/AN API Hispanic

Percentage of U.S. population 1973 on 1992 on 2000 on

OriginalSEER

FirstExpansion

SecondExpansion

AI/AN: American Indian and Alaska NativeAPI: Asian and Pacific Islander

Health Disparities Findings

• People from low income populations are often diagnosed at later stages with less favorable outcomes

• Need for better cancer prevention and early detection programs

SEER is Widely Used

• ACS annual Facts & Figures publication

• SEER-Medicare linkage• Patterns of Care/Quality

of Care studies• International Partners• State Cancer Profiles

State Cancer Profiles

http://statecancerprofiles.cancer.gov/

Hispanic

Black

White

SEER is Widely Cited

Publications: By the summer of 2008, there were 5,248 entries in the SEER online bibliography

Citations:• Basic research 66,879 • Clinical oncology 56,448• General medical research 49,941• Public health 29,340• Internal/general medicine 27,285

– Web of Science Citations for SEER 1981-2004

Surveillance Partners

The organizations include:• American Cancer Society• American College of Surgeons

Commission on Cancer• Centers for Disease Control and

Prevention’s National Program of Cancer Registries

• International Association for Research on Cancer

• International Association of Cancer Registries

• National Cancer Registrars Association

• North American Association of Central Cancer Registries

• World Health Organization

Timely Release of New Information

AI/AN and NHW incidence rates, lung cancer, both sexes, by region, 1999-2004

Rat

e pe

r 100

,000

AI/AN: American Indian and Alaska NativeNHW: Non-Hispanic White

Estimated Number of Cancer Survivors in the U.S. From 1971 to 2008

0

2,000,000

4,000,000

6,000,000

8,000,000

10,000,000

12,000,000

1971

1974

1977

1980

1983

1986

1989

1992

1995

1998

2001

2004

2007

Year

Num

ber

12.3 million

Projections of US cancer prevalence by phases of care, 2005-2020

Table 1. Projections of the US Cancer Prevalence by Phases of Care

Year All ages 65+ years Total Initial MonitoringLast-year

of life

2,005 295,507,134 36,695,904 10,797,060 986,602 10,537,886 259,1752,010 308,935,581 40,243,713 12,639,522 1,088,428 12,343,550 295,9712,015 322,365,787 46,790,727 14,666,942 1,205,722 14,330,122 336,8202,020 335,804,546 54,631,891 16,891,169 1,331,655 16,508,821 382,348

% increase2000-2020

48%

Population Cancer Prevalence (Number of people)

56%14% 49% 35% 57%

Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2005 by Site (N = 11.1 M)

• Public-use data• Over 2000 data use agreements per year

• SEER-Medicare • Over 500 data requests, 325 publications, 61

grants

• SEER Surveillance Studies• Over 260 publications • Background for grants, K07s

SEER Data Usage - Examples

• Surveillance Studies• Endometrial cancer and estrogen• Breast cancer incidence decline • Environmental tobacco—

Surgeon General’s Report• Rare Cancers• Health Disparities

• Cancer Etiology• NSAIDS and cancer prevention• AIDS-related cancers • Genetic susceptibility studies

• Cancer Outcomes• Patterns of Care—PCOS

Landmark Studies - Examples

SEER Database Features

• Population basis– Everyone is included, group is well-defined– Findings are generalizable

• Representativeness– Cancer burden not equally distributed by

• age, sex, race/ethnicity, social class, geography

– SEER samples population to include these groups

• Time– Trends in incidence, treatment patterns– Survival

• Public health monitoring• Size that provides capacity to evaluate

– Rare cancers– Cancer heterogeneity (tumor, patient)

• Research scope broadened through leveraging

– Linkage to a range of other population-based data sources

Understanding Cancer Burden

• Important for ongoing surveillance– All sites, common or rare– All populations, by age, sex, race,

geography• Identifying unusual patterns

– Rapid changes in incidence• Relevance to etiology• Relevance to public health

– Planning– Evaluating the impact of public health

interventions

Monitoring the Impact of Cancer

Cancers and AIDS Epidemic

Figure 1. Yearly incidence rates for Kaposi sarcoma and non-Hodgkin lymphoma from 1973 to 1998 --▴-- Non-Hodgkin lymphoma --•-- Kaposi sarcoma

Clarke, AIDS 2001

Non-Hodgkin lymphoma

Kaposi sarcoma

Age

s 50

-69

Release of WHI ↓ results 7/2002

New England Journal of Medicine – Special Report

Release of WHI ↓ results 7/2002

Ravdin et al, NEJM 2007

Size of SEER: Rare Cancers, Cancer Heterogeneity

• The four most common cancers comprise approximately 50% of the cancer burden

• However, >50 other cancers exist– Lead to considerable morbidity and

mortality• Beyond primary cancer sites, ~300

anatomic subsites and ~500 histologic subtypes

• SEER database = resource with adequate numbers to evaluate this detail

Neuroendocrine/carcinoid Tumors: A Growing Problem

Annual percent change in incidence rates by anatomic subsite, 1973-2005

Annual % change p-valueAnatomic subsite

Esophagus 0.94 0.19Stomach 6.85 <0.05Small Bowel 3.57 <0.05Appendix 0.66 0.27Colon 4.03 <0.05Rectum 8.28 <0.05Anus ~ ~Liver and biliary ~ ~Pancreas 2.38 <0.05Unknown Primary 3.49 <0.05All Sites Combined 4.39 <0.05

Tumor Heterogeneity: Lymphoma

Morton et al, Blood 2006

Differences across Groups

• Cancer burden differs across racial/ethnic groups

• Increasing diversity in US

• ~30% population = Asian or Latino

0

20

40

60

80

100

120

140

160

1976‐1980 1981‐1985 1986‐1990 1991‐1995 1996‐2000 2001‐2006

Age‐adjusted

 rate / 10

0,00

0

Black

Vietnamese

Hawaiian, Somoan

Non‐Hispanic white

Filipino

Korean

Hispanic white

Chinese

Japanese

Indian, Pakistani,Sri Lankan, Bangladeshi

Trends in Male Lung and Bronchus Incidence in Los Angeles County

Research on Disparities: Effect of Immigration Status

• Cancer patterns differ between immigrants and persons in country of origin

• Immigrant populations in the US are increasing rapidly

– In California, comprising• ~80% of Asians• ~60% of Latinos

• SEER data is being used to create a resource to study cancer incidence trends in specific Asian and Latino immigrant groups

Leveraging by Linkage

• Research breadth facilitated by linking SEER’s core data to other population-based data sources:

– Medicare– AIDS registries– Transplant registries– Census data and geospatial data for

characterizing social and built environment • Combined datasets expand SEER

research opportunities

SEER-Medicare

• Data resource created by linking patients from SEER with their Medicare claims

• Medicare claims provide longitudinal perspective on health care from eligibility to death

– Before, during and after cancer diagnosis

• Resource=2.4 million persons with cancer• One of only population-based resources

for studying quality of cancer care– Evidence-based decisions

Research Topics Using the SEER-Medicare Data

Treatment/Outcomes

Research Methods

Health Disparities

Health Care Systems

Screening/Surviellance

Economics of Cancer

Survivorship/End of life

Screening/Surveillance

SEER-Medicare: ADT and Prostate Cancer

• Androgen Deprivation Therapy (ADT) primarily recommended for advanced prostate cancer

• SEER-Medicare data assessed:– Long-term risk of adverse events:

• Fracture- 19% ADT users vs 12% ADT non-users (NEJM, 2005)

• Cardiovascular events- 19% ADT users vs 15% ADT non-users (Cancer, 2007)

– Use of ADT for localized prostate cancer• From 1991 to 1999, ADT use increased from 4% to

31% (Cancer, 2005) • Yet, no survival benefit of ADT over expectant

management (JAMA, 2008)

Public and Research Access to SEER Data

• Interactive public portal to SEER data seer.cancer.gov

• Software packages which increase ease of analysis of SEER data while reducing error

• Theoretical statistics research for high-level analyses

• Linked tumor tissue/SEER demographic and clinical data to support molecular science

Public and Research Access to SEER Data: Interactive Portal

Public and Research Access to SEER Data: SEER*Stat • Frequencies & rates • Frequencies & distributions • Crude rates (non-adjusted) • Trends (percent change,

annual percent change) • Age-adjusted rates• Incidence-based mortality

rates• Rate ratios for significance

testing

• Survival statistics• Observed survival • Relative survival • Cause-specific survival • Conditional survival • Actuarial and Kaplan-Meier

methods • Period method • Limited-duration prevalence• Multiple primary standardized

incidence ratios

Public and Research Access to SEER Data: Statistical Modeling

SEER Data on the Grid

caGrid

Data visualization and discovery toolsLink SEER with other data

Gapminder

BiomedicalResearch Data

Collect Inform Seize opportunity

Detailed NCI Progress SEERPopulation-based Review Group/ AYA HOPESurvival Data Lance Armstrong Study

Foundation Reportfinds survival improvementlags among adolescentsand young adults (AYA)

Translating Data into Opportunity

Survival Improvement Gap: Improvement in 5-Year Relative Survival, Invasive Cancer, 1975 – 1997

Translating Data into Opportunity: AYA HOPE Study

Information Technology -Electronic Data Collection

• E-path - tools tocapture patient data

– Efficient– Privacy-friendly– High speed –

today’s diagnoses tomorrow– Creates research opportunities

• e.g., population-based full text, clinically and demographically-characterized pathology records for 35 years for Los Angeles

– >175 laboratories installed

LaboratorySystem

Cancer RegistrySystem

E-PATH

SEER Moving Forward: Emerging Opportunities

Clinical Trials Support• E-path populated with clinical trial

eligibility criteria can send early automated alert to PI of potential patients

Information Technology -Electronic Data Collection

In development…

• E-path+– Additional clinical,

demographic andtreatment data

• Automated Cancer Extraction Software (ACE)

– Outpatient setting– Finds missed cases– Captures outpatient treatment, co-morbidities

Path labs

Cancer RegistrySystem

E-PATH+Doctors offices

Radiology

SEER Moving Forward: Emerging Opportunities

Survival Calculator• When someone calls 1-800-4CANCER and asks

about the prognosis of a family member who was newly diagnosed, where should the information come from?

• How can oncologists get a better understanding of how the chance of dying ofcancer and of other causes compete against each otherin assessing a patients prognosis

Population Cancer Pharmacogenomics Research• Identify specific epidemiologic,

clinical, and genomic profilesthat could enhance responseto therapy and minimizetoxicity

• SEER Lymphoma Pharmacogenomics Pilot Study

– A prognostic cohort study to examine the association of pharmacogenomic markers and response and/or toxicity of treatment for NHL

• Other opportunities for post-marketing surveillance?

Your Feedback

• How might SEER best be leveraged as a resource for the National Cancer Program?

• What additional data can SEER provide?

• What additional services can SEER provide to researchers, clinicians and the public?